adela

I am so sorry.

I am so sorry

I am so sorry for your loss. Take care of yourself.

Thanks everyone. We are doing ok. Many friends and family are stopping by. Ed thanks me everyday he says he is in heaven and I made it possible. It has taken me a full week to be able to put the stepson comments to the back burner. Ed is happy and eating a little more. He had a conversation with the Lord and that was quite amazing to share with Ed. Thanks again everyone.

Ed decided to stop chemo. He wants to go back to Seattle. We will fly out tomorrow. He is so weak. It has been quite painful the last 4 days. My stepson has accused me of providing inadequate care for Ed. That Ed is not clean, not eating and depressed. That he must have a professinal home health care aide at all times. That I have ignored and isolated Ed from his children. This kid has only visited Ed once every 2 weeks for a 1/2 hour. I told him he could come and help out and do things for his father. He told me I am the primary caregiver and his wife I should do it all. I have home health aides for bathing, my son stays with Ed during the day and I take care of Ed at night. To top it off he says he will get social services, I called a senior help office. They calmed me down and asked me what I have done to help my husband. I have requested and gotten Home Health care: physical thearipist, speech thearipist,social worker and a bath aide. Also I have hired a care giver at various times. Ed has no desire to eat, Ed would not ask for a antidepressant until a week ago. I bathe my husband, I walk him to the commode, I make him smoothies, I encourage him to eat. He is so afaird of choking he doesn't eat. He refused a feeding tube. A home health aide can not fix his refusal to eat, refusal to take antidepressants or reduce the necrosis and brain tumors. My husband wants me to take care of him. Community help me let go of this intense hurt and anger I feel.

I am sorry for your loss.

I am sorry

Ed got WBR our first doctor did not even talk about gamma knife.He had 5 mets I guess that is 1 over the recommended for gamma knife. I and Ed were so scared we jumped at a chance to do something. It is criminal that doctors will not discuss other types of treatments. We were extremely stupid. The members that get gamma knife for their mets it seems are much better. Ed can not swallow can not walk and his right hand is all over the place.

Ed is leaning towards no more chemo. He is still confused.He can hardly walk, he is still not eating enough. When he is sitting on the bed he falls backs and to the right.He losing coordination of his right arm and hand. The radiation oncologist states everything stable and we may have to wait for while before we see change. He wants to ask the oncologist what harm would it do not to have chemo for 6 weeks so we can go to Seattle. Last night a social worker came and spoke with us, I asked about Hospice. Ed feels calling in Hospice is a death sentence. The social worker explained that hospice can be pallitive(sp) care. That kind of satisfied Ed. So Ed still wants to talk to the doctor, he is 80% certain he does not want chemo. I am trying hard to stay calm and take care of myself. Another sleepless night. Does anyone have magic dust for this? I am so glad I stopped lurking and joined this great group.

My thoughts are with you and your family. Sorry you are going through this.

Thank you all for the support. Yes they are tough decisions. I lost sleep last night over this. Ed was in slumberland and got rest.

Ed is on a clinical trial Velcade and Alimta. CT Scan on 2/21.Oncologist stated that one tumor has reduced and others are stable, HOWEVER the CEA is up like 250. Doc said he is not going to pay attention to the CEA he will pay attention to the scan. Doc scheduled 2 more cycles. Ed is not eating or drinking liquids. This last week Ed keeps talking about going home we are in LA and his birthplace is Seattle. He told me 2 nights ago we had a home in Pacific County the home his father built. Today Ed woke up from a nap called me and told me I had to get him and take him home. He also called his son and told him the same thing. Ed started a downhill spiral when he lost his voice and could not swallow. He lost 12 lbs in 6 weeks. I am begining to feel perhaps Ed should not have anymore chemo.Ed would like to take a break and then take more chemo. Or have the chemo in Seattle. I doubt if that is possible. I don't think a cancer center in Seattle would be cooperating with one in LA to administer the chemo. He so wants to go home. I want to take him home. If he takes the chemo we won't be able to go until April 7. I don't know if he has that time and he is feeling he doesn't. For about 4 weeks I have felt Ed is depressed. Ed finally asked the doc for a antidepressent. Last night he took one and had a good night. Sorry for the rambling. I am concerned about doing the right thing for my husband.

Live in the moment.Our prayers are with you.

Don, hope Lucy does better the second time.

My husband applied for diability social seurity and got it in about 3 weeks. He got a appointement at the local socail security office. To apply is not as complicated as it seems. Once you fill out the form a medical conditions form is filled out by you and your oncologist. Good Luck

That is good news. You and your doctors have been a good team.

I also have the feeling of being overwhelmed with sadness and fear. The others have given good advice. Tell him you love him and how much he means to you. May you and your family cherish these moments with him. I have Book called A Life Worth Living and it has pertinent questions ie: What recollection do you have of parents,grandparents, great-grandparents and other relatives? Who was your friend in Grade School, Junior High and High School. Perhaps asking these questions would help you minimize your sadness. I am in the process of filling out the book with my husband and it has helped me. My prayers are with you and your family.

Ed can communicate at a whisper. I will try the second opinon of a speech thearpy. He keeps telling me that's the way Jennings sounded before he went off the air. Thanks all for the input.

Ed since the 26th of December has not talked well. The doctor said that the left side of the voice box has a nerve that goes down into the lung and comes back up. The nerve has a cancer tumor pressing against it This has devastated Ed and the doctor didn't say anything can be done. Since then Ed has been in a tailspin downward. Any thoughts on this and what I can do to get Ed's spirit up. Also he is not walking good at all his right side is getting weaker.

I have been reading the message boards for a year now. My husband is not doing well. Even though I have not intereacted with everyone. I have been able to be comforted by one and all. Adela